Tuesday, May 17, 2016
Parker is working on a blog post to share with everyone about how he “walked the entire walk” and how thankful we are to all of you…but in the meantime, we wanted to share that he is going through some pretty big stuff right now. Recently his rheumy shared that she believes that he has an additional overlap disease of ankylosing spondylitis. As we shared previously, his SI joints are complete inflamed and huge on his MRI. For the last couple of months, his doc has been trying to get a new biologic shot approved (stelara). Unfortunately, even with an override request it still wasn’t approved. So, the next step was to get approval for another biologic (simponi). The bummer is that this med is an infusion which means we will be traveling back again to the infusion room for treatment.
Parker is really in some considerable pain from the SI joints, and although we tried the nerve stimulator, it didn’t work and had to be removed. We are going to stay hopeful that the new biologic will be helpful for his SI joints, along with helping his jaw, shoulders, back, hip, neck, knees, ankles and feet. But we are seriously taking a huge leap of faith with this new step forward.
The biologic that Parker is currently taking targets his systemic JA issues and this included his rashes, fevers, and internal organs. This switch is pretty scary for us. His doc has checked his heart and it is good right now, of course that is our biggest concern. So concerning that Michael spoke up and asked the doc about it. And instead of saying “what about his pericardia effusion” he asked “what about his periodic confusion”…I wish you all could have seen her face, the hesitation as she tried to comprehend what he said was hilarious (oh what stress can do to one’s communication)…and she replied, “I don’t know what to do about your periodic confusion, but we can check for pericardia effusion and keep a close eye on him.” I tell you, there are so many moments that Michael makes me laugh, but boy the moment was priceless…we all started laughing. And oh how we needed to laugh.
So, as we take this new leap of faith, we will be travelling back to the infusion room starting this week. Please keep our kiddo in your prayers and thoughts. Much thanks.